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Before any diagnosis query about symptoms

Hi I am a 39 year old female.

I had vision problems, last year with other symptoms, and went to the opticians, she queried MS and sent a letter to my GP about it.

I then went to the open scanner in cheltenham to have a MRI scan. I was unable to have the contrast dye due to severe anxiety and panic.

The neurologist said they had found a angioma, and said it was nothing to worry about, and these things were often found by scanning for other things. They could not find anything linked to MS.

Despite other symptoms contiuning I have got on with things. The last month, I have now got numbness in the bottom of both feet, sensitivity to light and blurred vision, occasionally having bladder accidents, and trouble walking.

I have looked up the angioma symptoms etc and that does not cause the symptoms I am having.

I did not have any scan on my spine or lumbar puncture, or a evoked potential testing (as stated on nhs website).

Could these be linked to MS, or would the MRI scan last year of found it?. I do not have diabetes.

Thanks for any help.

Hello Emma

It’s not really possible to give a yes or a no answer to your question on this forum.

You would be better off going to your GP and asking for advice and/or for a new referral to the neurology department of your hospital. (Unless you haven’t been discharged by the neurologist and can just ask for an appointment.) The problem is that there are so many symptoms which are associated with MS that also can be attributed to other diagnoses.

And it’s possible that had your MRI been done with contrast more might have been picked up, or maybe not.

Sue

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I agree with Sue. One more point: if someone did want to do another MRI scan at some point, you know the drill now and can, perhaps, take some time and get some help to prepare yourself to be able to handle it without it causing you so much distress. In particular, the clinicians (GP, neurologist, whatever) should be able to prescribe a short-acting but jolly effective sedative that should see you though a scan. Even just knowing that you will be taking it might help a bit. The only drawback I can think of is that you would need someone to drive you home! My point here is that there are ways to help you through. It is by no means uncommon for people to need some help with this, and it is in everyone’s interests to find what works for you. Alison

One more thought on the MRI process. Naturally, I can see the attractions of an open scanner - the knowing that it isn’t enclosed. But, if your eyes are shut, how much difference does that really make? I have had MS for a long time and have been in many scanners, but have seen the inside of just one of them, and that briefly, having always kept my eyes firmly shut from the moment I get on the bench to the moment they tell me I can get up now. Only once did I make the mistake of opening my eyes while inside - I do not intend to do that again because I got a nasty hint of the kind of trouble you face and don’t want to go there again.

My point is, what is the chance of managing in a more local to you (closed) scanner with some prescribed knockout drops and some airline eyeshades that you are not tempted to remove? Apologies if this is completely missing the point and just me failing to understand how hard it is for you.

Alison

Hi i have had a lot of scans at the Cobalt centre in cheltenham, and one was the dye for contrast. You dont feel a thing with the injection you dont even realise they do it. Although after research i found it was not always a useful tool although it did show a very bright dot on mine the radiologist thought it was an Arc a fault on film, but my neurologist Dr Martin who covers that area ( love him brilliant man), beleived it was an MS lesion.

After a year and if your developing these symptoms i would go back and see your neuro. If you are starting off with MS the scans can be pretty clear and some are only in the spine anyway. I had all the tests and each one showed something leaning towards MS but it still took over 10 years with a second VEP to get the answers, so be prepared for a long journey. Mine was blindness to start then numb left foot etc. Its worth having a chat with your doctor if your worried ok.

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I am wondering can anyone recommend a neurologist on here or via private message?. the one i saw just sent a letter to say they had found the angioma and that was it. no follow up or anything. said another mri in 6-12 months, and that was 13 months ago. The GP prescribed me diazepam which i took when I tried the conventional mri and I dont usually say anything to anyone, but I went in, was sitting on the bed ready for the mri and just got up and left. apologising all the way. they had to do the open mri a few times while I was in it as I was shaking so much. I had been in it 90 mins by the time they got me out to do the dye and I was in tears and distressed, they couldnt find a vein went off to find someone to see if they could put it in via a foot or something and I asked to leave. with hindsight should of maybe had it but phobias and fears sometimes have no reasoning. I hate feeling enclosed and trapped. x

The problem you are going to face Emma is that even if you find a neurologist who appears to be more sympathetic, you can’t get any further with an MS (or other neurological condition) diagnostic process without an MRI. And if you can’t even have an open MRI with the help of Diazepam, you are going to have problems having anything tested for. A neurologist isn’t likely to give you a lumbar puncture or a VEP unless an MRI scan showed a reason for it. If the neurologist you saw said they’d do another MRI in 6-12 months, you could get onto their secretary and ask for a repeat appointment. Or of course, you could try and see another neurologist. But the question is how to overcome the fear of the MRI? If Diazepam didn’t help, and the open scanner was no better, I don’t know what to suggest. Hypnosis? I suggest that you should see your GP, explain what symptoms you have, the problems you found with the MRI scanner and ask for his or her help. Maybe there is a solution that only someone seeing you face to face can help with? Sue

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For what it’s worth, I had my i/v catheter placed before I went in to the MRI suite. I was given i/v diazepam before I went in and dozed through much of the procedure. I’ve had similar success with i/v diazepam when I was having endoscopy as I was emetophobic and was told vomiting was likely. It works much better i/v than orally.

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I’m no pharmacist, but I do know that diazepam is not the only benzodiazepine on the shelf; that there are others that (unlike diazepam) are particularly good at very effective short action (2-4 hours) and so lend themselves particularly well to situations like yours. You’re not out of anti-anxiety drug options yet.

Alison